Ovarian cyst or possible ovarian cancer

[Hannah1589]

Found out I have something 7cm big on one of my ovaries (from ultrasound). I know likelihood is it’s a cyst but have been told they need to check it’s not cancer. Process seems so slow, tempted to go private. Anyone had experience of this? I have MRI booked with NHS for Friday and saw Gynaecologist last week under 2 week referral. Original ultrasound was on 19th August which I had after going to GP about fertility issues. I’m so bloated, feel fuller and have started getting pain from it. Just want to know if it’s cancer as quickly as possible.

[Trickysite]

It took me 3. Months from elevated CA125 test to start oftreatment for various reasons. My onc said. not much change.Understand your urgency but as your MRI is imminent I would not worry about time factor in your shoes. I wish you all the very best. Emma x.

[Hannah1589 in reply to Trickysite]

Hope your treatment goes well and thanks for sharing your experience.

[SophieZ]

There is a test called a Circulating Tumor Cell test that originated in Switzerland in 2004 called the RGCC test. Some integrative oncologists utilize it in the US. There is a version of it that was FDA approved a couple of years ago. One company that does it is called CellSearch but there are a bunch more. This is a simple blood draw. If any circulating tumor cells (cells that have broken off from an existing tumor) or tumor DNA is found then they are able to tell where in the body the tumor originated as well as any genetic mutations. This could help with early detection. This test is essentially a liquid biopsy and is able to detect tumors before they are even large enough to appear on a scan. Ask for a referral to a gynecological oncologist and demand the test. They have access to it but don’t use it commonly in “clinical application” yet because they claim it is “new” technology even though its been around since 2004.

I wouldn’t rely on a scan alone to tell you if its just a cyst. I was told for years that I had “just a cyst” and then told it was an endometrioma from endometriosis. Upon operation to remove endo the biopsy came back as ovarian clear cell carcinoma. Not to scare you but if I had known about this blood test prior to operation I would have gotten it done before allowing them to poke around and rupture it in me for removal purposes. You have to take the precaution of ruling everything out and you can’t rely just on scans which didn’t show anything irregular for me…even though it was.

[Hannah1589 in reply to SophieZ]

Thanks for sharing your experience. Did you have the tumour markers done? (CA 125 etc.) I was told they look at the MRI scan in combination with those and will do CT scan if needed. I will definitely question everything to make sure there is certainty of the situation. Hope you are ok now and any treatment is going well for you. Thanks for info about the RGCC test.

[SophieZ in reply to Hannah1589]

I didn’t have CA125 tested before laparoscopy for endometrioma because they were “certain” it was endo based on my scan. Also CA125 is an antigen meaning it can respond and elevate if anything is a little off in the pelvic area. Which means it can be higher than usual if you have endo, have your period, are pregnant or inflammation from surgery. The highest mine was when I finally got tested after diagnosis was 60 right after my surgery. Then dropped to 30 on its own. Now its down to 14. That being said… its not a number you can rely on for all types of ovarian cancers or all types of patients.

The Circulating Tumor Cell test would be more accurate. If they don’t offer the RGCC test specifically then ask for their version of a circulating tumor cell test (or liquid biopsy) thats approved conventionally because the technology has been approved for years… they just don’t always apply it. Hopefully if you get it done through them insurance will cover it. Otherwise prices can range from around $900 just to test for the cells up to $2500 to test for chemo sensitivity and genetic profiling.

[TealSong]

Hey, I had a cyst found on ultrasound with an area of concern. MRI couldn't shed light on what it was for certain (50/50 complex endometriosis or cancer) so I had surgery to remove the ovary, fallopian tube and do staging. It was only when it was taken out that they could find out for certain. It was cancer, but fortunately found at an early stage so I didn't need any further treatment. The waiting is the hardest part, not knowing and just wanting the cyst, whatever it is, out! Sending lots of love, hope you find out more soon. Xx

[Grounsel in reply to TealSong]

Hi I had a leison found on an ultrascan , tumor cell test was normal . Had ovaries and tubes removed 3 weeks ago how long to you get results ? My doctor says there not in yet .

[TealSong in reply to Grounsel]

Hey, hope you're recovering well. Most of the results were back after about 3 weeks for me, with the peritoneal washings the week after. X

[Grounsel in reply to TealSong]

Thanks I thought they would be in by now . Yes I'm recovering well but worried about results . Hopefully get them soon .

[Fluffyjumper]

Hi HannahWaiting is hard but you have you MRI booked and should get the results soon after. Try not to worry too much. It is much more likely to be a benign cyst than cancer. If the cyst is causing you significant discomfort such as bloating or pressure on your bladder, you may be advised to have surgery to remove it.

[Hannah1589]

Now been told it’s either borderline tumour or cancer. Won’t know until they take it out. Got CT Monday and they will discuss Friday and let me know next steps. All such a shock. I went to see a different more specialist gynaecologist as I was worried by what was written in my ultrasound report- seems I was right to be worried.

[Nattahlee in reply to Hannah1589]

did they get that from your MRI? Fingers crossed 🤞🏼 for you as the waiting is the worst of not knowing. I feel like yourself as going through similar.

I feel at moment every appointment I’m not further forward as still 100% not confirmed but they’ve definitely said I have cancerous cells in my biopsy which doesn’t help

[Hannah1589 in reply to Nattahlee]

No they didn’t have the MRI result yet but this gynaecologist was more experienced and could tell me that from my ultrasound. It’s hard not knowing if it’s cancer and I’m nervous about what the surgery will involve. I should find out more on Friday but won’t know if it’s cancer until after the operation. Just trying to distract myself as much as I can but it’s not easy.

[Grounsel in reply to Hannah1589]

Hannah had you long to wait from your operation for the results ? I had my ovaries removed 3 weeks ago and my doctor has no results yet .

[Berz in reply to Hannah1589]

hi Hannah, I hope you are fully recovered now. Could I please ask when you say you went to see a more experienced gynaecologist did you pay fir this privately ? Or did you ask to see someone else ? Thank you

[Hannah1589 in reply to Berz]

I went privately to see a specialist gynaecologist. Fortunately when I had my MRI it turned out I had a fibroid just quite a weirdly positioned one so it had looked like a tumour. Had it removed in October, again privately so all recovered now.